The quarterly newsletter of the
Huntington’s Disease Associations of New Zealand
ISSN 1174 9229
Many people at risk of
passing the incurable
Huntington’s disease
to their children do
not use the technology
that could stop this
happening.
June 2009
Issue 105
The ultimate test
“Do you really want to
know you are going to
have a disease that will
reduce you to awful
circumstances?”
Jeanette Wiggins
Bridget Lyon and son James
For David Lyon, the worst aspect of Huntington’s disease is not the awfulness of the condition,
even though he is watching it take its inexorable toll on 67-year-old wife Judy, but knowing the
couple have passed the gene on to another generation.
“Look what we’ve inflicted on our kids,” says Lyon slowly, and with the burden of regret
audible in every word.
From their family home on a hill above Mana, north of Wellington, the Lyons can look out at
the Tasman Sea from their lounge, then turn around for a fabulous view over Pukerua Bay in
the other direction. On a fine day, they are views to lift spirits – which is good for Judy, whose
world is shrinking as the degenerative brain condition takes more of a hold, and good too for
her husband, who is both a devoted carer and tireless advocate for his wife, Judy’s mother died
of Huntington’s disease (HD), as did Judy’s grandmother, but not a lot was known about it then.
Not until near the end of Judy’s mother’s life was the diagnosis made. A relative looked it up
in a Life magazine, where HD was described as “the worst hereditary disorder you can inherit
in the world”.
Symptoms of the disease usually show between age 35 and 50, but sometimes long before
this. It is characterised by memory loss, gradual cognitive failure and uncontrolled jerky limb
movements, which means those with HD are often confused with drunks. Sufferers can become
obsessive, compulsive, irrational and sometimes violent. Eventually, death occurs – usually
within 15 years of the symptoms first showing, and usually due to pneumonia or choking. Along
the way, and because HD repeats in generations, many families become dysfunctional. There is
a higher than normal rate of suicide, and marriage breakdowns are not uncommon. The children
of HD-symptomatic parents may be isolated if they feel they can’t bring friends home because
the condition is too difficult for other people to cope with. Sometimes one sibling who has the
gene might become bitter towards other siblings who do not have it. Sufferers become unable
to work, so are often poor.
By the time Judy’s mother was diagnosed with HD, David and Judy already had one daughter
and two sons of their own – and if Judy turned out to also have the HD gene, then the dice had
already been rolled for their three children
Continues on page two
Huntington’s News
June 2009
Issue 105 1
Continued from page one
HD is unusual in that carriers of the gene do not simply
have a susceptibility to the disease: they will develop
it. And those who do not have the HD gene can neither
develop it nor pass it on.
When she was 54, Judy was tested: the result was HD
gene-positive.
“By then, our children were in their 20s and all living
overseas,” says David. “We had to try to communicate,
over the phone, that they could develop HD.” Of the
three, Bridget, now 36 and a film editor in Sydney, is
the only one to have become a parent. She says her first
pregnancy was unexpected. She and her partner went to
genetic counselling, where they discussed testing her
fetus, but she was told there was little point unless she
would terminate the pregnancy if the baby was found to
be HD gene-positive. And if it was, it would also mean
Bridget had the HD gene.
It was too much to deal with right then, so she went ahead
with the pregnancy without any tests and her son Finn,
now four, was born. His HD-status is unknown and will
remain so until he is an adult, when he can choose to be
tested. “The idea of him having it is horrific,” Bridget
says.
Because she wanted another child, she felt she needed to
determine her own gene status. “I thought I’d get lucky,
not have HD and would be clear to have more children.”
But like her mother, she too tested positive.
So, for their next child, the couple opted for in vitro
fertilisation (IVF), using pre-implantation genetic
diagnosis (PGD). First, they had to find about $15,000
- half of which was later refunded by Medicare, “but we
were still scraping the money together on the morning of
the procedure”.
In due course, four embryos were produced. Three tested
positive and the one that was free of the HD gene was
implanted, with Bridget then facing the usual stress of
IVF patients hoping the pregnancy held. It did, and she
subse­quently gave birth to another son, James.
The decision to have PGD may seem obvious; David
says he and Judy would have been in “boots and all” had
the technology been available when they were starting a
family.
But Jeanette Wiggins, the Huntington’s Disease
Association’s Wellington branch adviser, says not many
people at risk of HD avail themselves of PGD. “The HD
community is not full of people saying, ‘We’re going
to have PGD’, although there are certainly many who
choose never to have children.”
Fertility services provider Fertility Associates says 40
PGD cycles are publicly funded each year, although that
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June 2009
also covers conditions other than HD, and some patients
have more than one cycle, meaning fewer than 40 couples
a year use the process.
“A lot of people at risk of HD themselves simply don’t
want to think about it, so they just go ahead and have
kids,” says Wiggins. “We run camps for children of HD
parents, and take a geneticist and talk to the children, but
as far as I can ascertain, it doesn’t always get through.”
She is becoming more understanding of those who are at
risk but who say they simply do not want to know.
“I started out in this job thinking ‘well, of course you’d
want to know your gene status’ and ‘of course you
wouldn’t have children’, but now I understand it better.
“Do you really want to know you are going to have a
disease that will reduce you to awful circumstances?
Or do you carry on until you become symptomatic? Or
do you just carry on and nothing ever happens because
you never had the gene anyway? It is so harrowing for
some people. They have watched terrible things happen
to their family and do you want to know that is going to
happen to you?”
Wiggins says she sometimes visits a woman in her 70s
who has started working as a cleaner so she can pay
the $200 a month for the thickener many HD sufferers
consume once swallowing becomes more difficult,
and which her son needs to eat to help him get enough
nutrients. There are many such desperate stories.
But in Sydney, Bridget Lyon is determined not to see HD
as the grim prognosis suggested by Life magazine and
delivered to her family so many years ago. For a start
there is the possibility of new medical breakthroughs.
Also, she is free of symptoms so far and still finds it
difficult to imagine herself succumbing.
“Sometimes I engage with it and have a little cry. My
psychologist asked what it was that scared me most and I
said I wanted to end up being a wise old woman and now
I’m going to be a stupid one at best.
“I know for lots of people it is the movement associated
with the disease that is the big thing, but for me it is
the loss of ability to be emotionally engaged and to
experience life. I have thought that would be horrifying,
the thought of it happening to Finny is horrifying, and I
think, ‘What a nightmare.’
“But my parents are remarkable -they are determined,
they keep trying- and I imagine some of their motivation
is to make us have a more positive attitude towards it. I
don’t view it as a death sentence.”
Acknowledgement:
Joanne Black – The New Zealand Listener
14 March 2009
Huntington’s News
Avoiding a passive lifestyle may delay the onset of
Huntington disease
The findings of this study were presented at the Christchurch HD Conference 2008.
This was a collaborative study between, Virginia Hogg, Lynette Tippett, Richard Roxburgh, Zoe Horton,
Veronica Collins, Andrew Churchyard, Martin Delatycki and Kaye Trembath, who are researchers based in
Melbourne and in Auckland.
Background.
For many years the researchers had been interested in
whether environmental factors, such as activity levels,
could influence the age at which symptoms begin
in individuals with HD. Other research evidence,
summarized to follow, had contributed to this interest.
Huntington disease (HD) mouse-model studies show that
rearing mice in an enriched environment delays the onset
of symptoms and slows the progression of HD.
The only known factor which influences the age of onset
of HD symptoms is the CAG number, however this only
accounts for between 50% and 73% of the variance at
which symptoms appear in individuals. This leaves a lot
of room for other factors to have an influence. In addition,
research suggests identical twins may have different
symptoms and different ages of HD onset. This suggests
that lifestyle or environmental factors may affect the age
of onset.
Evidence from other studies suggests that lifestyle
factors, for example, regular activity prior to the onset
of symptoms, can delay or ameliorate other diseases
including Alzheimer’s disease.
How was this study done.
The group in Melbourne had already begun this research
and we joined them in conducting questionnairebased interviews, with 154 (NZ 25 and Australia 129)
individuals who had symptoms of HD. The questions
were designed to find out about individuals lifestyle
(before HD), including their participation in leisure
and non-leisure activities (education, occupation and
domestic duties). Activities were classified as physical,
intellectual or passive, and scores generated under the
categories; leisure, non-leisure and total lifestyle. These
scores were then matched with the age at which the
individual began to have symptoms of HD and their
CAG repeat length.
What we found.
After adjusting for CAG repeat size, a more passive
lifestyle is associated with an earlier age of onset of
HD. That is, for those who had high levels of passive
activity (activities that do not require little initiative
and no physical or intellectual challenge) for example
watching TV or DVD’s, tended to have an earlier age of
onset than those who had lower levels of passive activity.
The results suggest that the difference in the onset of
symptoms between the group who had the lowest levels
and the highest levels of passive activity was 4.6 years
(that is nearly 5 years!) A five year delay in the onset of
symptoms is significant.
Finally (although this was not what we predicted) we
found that activity levels for intellectual and physical
activities did not affect the age of onset.
It is always much more difficult to study humans than mice,
we are so much more complex and may be affected by so
many more factors (e.g. diet, social support, personality),
however this study begins to increase our understanding
of possible environmental factors that may affect the
age of onset of HD. My colleagues in Melbourne report
that the Environmental Modifiers Working Group (with
the European HD Network) are keen to look more fully
at the impact of activity levels among other things by
studying an even larger group of people throughout their
life before they develop symptoms of HD.
What can we conclude from this study.
The results from this study suggest that, for those people
who are at risk, or who have inherited the HD gene should
try to reduce the amount of time they spend doing passive
type activities (e.g. activities which take no initiative or
physical or intellectual challenge). This does not mean
that you should be physically and intellectually active
24/7 as rest relaxation, socialization are important too,
rather make sure that you don’t overdo the passive.
My thanks to:
The participants and their families in both Melbourne
and New Zealand for their time and input.
Our Melbourne Collaborators, at the Bruce Lefoy Centre
for Genetic Health Research.
Deb Nagel, Jo Dysart, and Lynne Farrow from the
Waikato, Auckland and Wellington HD Associations and
Margaret Simmons Amaryllis House for their help.
Professor Richard Faull, for his support and the Matthew
Oswin Trust, and the New Zealand Health Research
Council.
Virginia Hogg
HD Researcher
Huntington’s News
June 2009
Issue 105 3
Real People @ The Beacon
Last week, 13th May, I was in need of some very positive
inspiration as my wife, Bronwynn, had passed away the
week before after a long, long illness of Huntington’s
Disease. I decided to call in at The Beacon which is a day
respite service for people aged 20 – 65 years who have
a deteriorating neurological illness, situated on Napier
Hill.
I have known Lynne Parsons, who is the Manager of The
Beacon, since the facility was opened in 2000. Lynne
has provided the energy and inspiration to establish
this wonderful service with outstanding support from
Presbyterian Support East Coast, a band of willing
workers both paid and volunteers, and an extremely
supportive local community in Hawkes Bay.
In 1998, one year after Bronwynn was diagnosed with
Huntington’s Disease, I was appointed as a community
representative to the Disability Support Advisory
Committee formed by Bay Home Support. The interest
for me was the inclusion in their proposed agenda of
development of an under 65 residential care facility for
Hawkes Bay. We had already required respite care and
Bronwynn had been to Noel Hamilton House in Greytown
in the Wairarapa which was 250km from home in Napier.
The alternative was Rest Home care in Napier which in
my eyes was not “age appropriate” as Bronwynn was
only 44 years of age.
The DS Advisory Committee spent some time talking
about care facilities and doing further surveys to
establish a need for such age group units but was not
making progress so I decided to take this agenda item
over myself and attack the problem from the other end
– find a provider who wished to establish such a facility
and work back from there. I approached a Rest Home
which was interested in sectioning off a wing in their
existing business as a separate 16 – 65 unit, but I decided
that this was not the best solution.
Then one morning by chance, Faye who was a nurse who
completed personal care for Bronwynn each morning,
mentioned that she had heard that the elderly residents
at Hettye Charles Rest Home on Napier Hill were being
moved to Atawhai, a newer and larger home in Taradale.
This small home on the hill with the amazing views over
Napier city would then be vacant. I had delivered bread
to this home at 3am when I owned a bread run a few
years before so I could see potential here.
This was great news for me as I could see that this
was the ideal situation for an “age appropriate” home.
Immediately I visited Frances Hemphill, who was the
Manager there with Bronwynn, and asked her what the
plans for the property were. As nothing had been finalised
then, I outlined my idea that it be used for the care of
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June 2009
16 – 64 aged people like Bronwynn. Frances was very
receptive to this idea so she made an appointment for
us to meet Liz Andrews who was Health and Disability
Manager at Presbyterian Support in Havelock North.
A further receptive meeting ensued and I then wrote a
proposal for the Board of Presbyterian Support. This was
early 1999 and The Beacon was “born” just over a year
later.
Unfortunately, Bronwynn did not see the renovated
service on the hill. She would have loved to have had a
massage there in the Massage Room, listened to music
in the sun drenched lounge or had lunch in the newly
extended dining room. Her art skills may not have been
great but she would have had a go and her wonderful
ability to knit any pattern may have been rekindled.
However, Bronwynn’s health had deteriorated and she
went into full time care at Noel Hamilton House in
Greytown and when the new home was built in Greytown,
her input was to have kitchen and dining room benches
to be installed in the same finish and colour as our house
in Taradale. When Amaryllis House in Lower Hutt was
opened, a specialist facility for those with Huntington’s
Disease, Bronwynn moved there. Her colour scheme
for drapes is evident in both of these “age appropriate”
wonderful care facilities.
The “Real People” at The Beacon have produced a
positive inspirational book entitled “Sucking on the
Lemon of Life”. I recommend this book to all, not only
carers and those with Huntington’s Disease and their
families but everyone. There are some lovely stories of
achievements and overcoming difficulties recorded.
Nearly ten years later, I attended a seminar in Auckland in
April this year regarding care facilities for this same age
group, 16 – 64. It was great to hear senior representatives
from Ministry of Health, ACC, Accessibility, care
providers, funders and the representatives of users all
on the same wavelength singing the same tune that it is
not appropriate for those with disabilities to be placed in
Rest Homes for the elderly. I now await with interest to
see the establishment of further “age appropriate” homes
like The Beacon, Noel Hamilton House and Amaryllis
House.
I see The Beacon as Bronwynn’s “legacy” to the people
of Hawkes Bay.
Cecil O’Neale
Chairperson
Huntington’s Disease Association (Wellington) Inc.
Copies of “Sucking on the Lemon of Life” can be
obtained by emailing [email protected]
Huntington’s News
This is an abridged version of an article that appeared in the AHDA (Qld) Newsletter
HURRY UP AND WAIT!
A Cognitive Care Companion
Huntington’s Disease in the Middle and More Advanced Years
By Jimmy Pollard
This chapter is from Jimmy Pollard’s book Hurry
Up and Wait!. Copies of the book can be ordered at
http://www.lulu.com/content/2517713
Huntington’s Disguise
As HD progresses, it places a mask on the person that
you love. He’s the same person, but it’s often difficult
to see him behind the disguise. Sometimes people who
are unfamiliar with him meet him and say hurtful things
like ‘he’s a different person” or “he’s not the same
person that he used to be.” But understanding some of
the more subtle aspects of HD can help you see through
the disguise, “Huntington’s Disguise”. It should come as
no surprise that beneath it is the same person you have
known, loved and cared for all these years.
bored or disinterested. They may be “smiling inside” but
appear to be less than excited about seeing an old friend.
When the friend greets him and asks about his family, he
may have to wait a few seconds for an answer. He may
begin to feel that his friend is not interested in their brief
reunion.
Sometimes HD makes it difficult to organize your
thoughts when you need to answer questions. Just
thinking about saying “Everyone’s fine and my brother’s
back home” may take ten extra seconds. While waiting to
process the answer, his friend may suspect he’s not really
interested in a conversation. Other aspects of changes in
muscle tone may lead you to falsely believe that he isn’t
interested in interacting with you. But understanding
these aspects helps you to see through the disguise to the
person behind it, as excited as ever to see an old friend!
Physical Elements of “Huntington’s
Disguise”
The general appearance of the face is as if the forehead,
cheeks, eyes and mouth are drooping off the skull.
Hypomimia is a condition of reduced facial expression
that has a number of causes.
Poor eye contact due to motor impersistence.
Jim Pollard/Laurel Lake Centre May 2001
The two familiar masks on the left, Comedy and Tragedy,
represent ancient Greek theatre. The actors wore them
so they could quickly change characters and show their
emotions to the large audiences in outdoor amphitheaters.
The simplicity of the features quickly conveys our most
basic human feelings: happiness, joy and delight or
sadness, sorrow and grief. Our humanity connects to the
feelings by recognizing the facial features on the masks.
Huntington’s Disease places another mask on the faces
of those it touches. It alters those easily recognized
features. It becomes difficult to see how one is really
feeling or what they are actually thinking. Sometimes it
disguises them so well that we wonder if they’re feeling
anything. It looks like the mask on the right. This mask
is “Huntington’s Disguise.”
Sometimes weakness and changes in the tone of the
facial muscles give people the appearance of looking
The difficulty maintaining a smile as one converses
may signal that he is not very happy to see or speak with
you. Very, very small muscles around the eyes and in the
forehead contract very subtly when you listen attentively
to someone speaking. In effect, they unconsciously
communicate that the person is listening intently.
Perhaps motor impersistence makes maintaining these
contractions and the others involved in smiling very
difficult.
Leaning to one side or other changes in posture as he
listens to you may suggest that he really doesn’t want
to be here with you. Perhaps it’s one shoulder dropped
lower than the other while he’s standing in front of you
that suggests “an attitude.”
Head tilted forward a bit, perhaps due to postural
changes related to dystonia, limits his direct, sustained
eye contact as you speak and listen.
Loud, plosive speech when he greets you or answers
your questions may suggest that he’s angry or impatient
with you. When you ask, “How are you?” he has difficulty
Huntington’s News
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June 2009
Issue 105 5
Continued from page five
modulating the force of his movement and coordinating
his speech and breathing. He may appear to shout back,
“GOOD!!!” Or perhaps, just the opposite...
Barely audible speech in a monotone when you inquire
about his day, he whispers, “I’m fine.”
Slouching down while in a chair can create an appearance
of boredom, irritation or disinterest with you. In fact, it
may be due to changes in muscle tone, muscle weakness
or some other aspect of HD.
We make eye contact when we speak with people. When
it’s our turn to listen, very tiny contractions in our facial
muscles signal that we’re paying close attention. These
minuscule contractions of the muscles in our forehead
and around our mouth and eyes persist until it’s our turn
to speak again. They are so subtle that you may not have
even thought about them. We do it unconsciously. We
use them to reassure each other that we are interested and
fully engaged in our conversations.
“Motor impersistence” is a characteristic of HD’s
movement disorder. As it progresses, people may have
difficulty maintaining contractions in their muscles. If
it appears that your friend with HD is not interested in
speaking with you, these tiny contractions that convey
attention may not “persist.” This prevents him using
them to signal his interest in speaking with you. They
may appear momentarily when he begins to listen, but
they won’t “persist” for long. This, too, is an element of
“The Disguise.”
Dystonia is often a very disabling feature. Early on it
may manifest as a change in posture. There is no one
characteristic dystonic posture among folks with HD. It
affects posture in many ways. Over the course of HD,
families become very familiar with leaning over or
slouching in chairs. Most often it is related to dystonia.
Although postural changes may be subtle in degree, they
can make a not-so-subtle contribution to the disguise.
Cognitive Elements of “Huntington’s
Disguise”
No timely response to a greeting or compliment.
A delayed response to a question.
An impulsive “No!” to a suggestion.
Repetitive insistence when you’re busy, asking for
assistance, or saying the same thing over and over.
He can’t wait when we he asks you for help.
An apathetic “Whatever...” to a warm invitation.
The physical elements create a mask. The cognitive
elements place a veil over that mask making it even more
difficult to see the person for who he is.
From “Disguise” to “Huntington’s
Delusions”
Sometimes the disguise fosters false beliefs about what
someone is thinking or feeling. A delusion is defined as
a “false belief.” Such a false belief is a “Huntington’s
Delusion.” There are many. Some are:
• “He’s not interested.”
• “He’s bored.”
• “He’s lazy.”
• “He doesn’t like me.”
• “He’s impatient.”
• “He doesn’t understand what I’m saying.”
• “He’s not paying attention to me.”
• “He only cares about himself.”
• “He doesn’t remember me.”
Perhaps the most common delusion comes
from these elements:
• He has difficulty with balance.
• His speech is a bit slurred.
• He doesn’t answer questions quickly.
• When he does answer a question he does it loudly.
Perhaps with a short fuse
It’s an easy presumption that he’s drunk! Several years
ago the Huntington Society of Canada had a public
awareness campaign whose theme was “He’s not drunk.
He has HD.” In fact, Dr. George Huntington described
those in his care as “suffering from chorea to such an
extent that they can hardly walk, and would be thought
by a stranger to be intoxicated” in his 1872 article.
Sometimes the grimacing that is driven by The Disguise
may give the false impression that he is in pain.
Seeing Through the Disguise
The disguise presents the cognitive and physical features
of HD in a way that is relatively easy to explain to people
outside your family. It’s a teaching tool that forewarns
people that HD may mislead them. It also prevents the
“delusions.”
Simply labeling this collection of features as “Huntington’s
Disguise” creates awareness. Family members describe
HD thousands and thousands of times to friends and
fellow workers. We have our nutshell descriptions of HD
and its symptoms. Include the notion of the disguise in
those brief explanations with a few words. For example,
“and it makes you look bored or disinterested.” Or
“sometimes it makes you look angry when you’re not.”
Continues on page seven
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Huntington’s News
Continued from page six
Associations can include the disguise in newsletters and
fact sheets. You can teach it to your extended family,
especially those most unfamiliar with HD. It should
be taught to care home staff, too, if they are to truly
“understand HD”. Some of the people in the life of your
family may be misinformed or naïve about the disease.
The disguise is a practical beginning to teaching them
more.
Associations around the world have addressed the
problem of Huntington’s delusions with “I Have HD”
cards. They are small cards that list a few of the symptoms
of HD. For example, the card provided by the Scottish
Huntington’s Association says, “I may be unsteady and
my speech may be slurred.” The cards are to be used if
a police officer sees someone with HD and presumes
that they are intoxicated. Recalling the Monopoly board
game, a young man with HD refers to his card as a “Get
Out of jail Free” card! The disguise can be added to the
cards with a few words such as “I may look disinterested
or angry.”
As early as our infancy we learn to read non -verbal clues
about how people are feeling. The Disguise reminds us
that we can no longer presume that a particular facial
expression conveys the same feelings that it has in the
past. An appearance that once signaled disinterest may
now signal something else, if we look more closely
behind the mask.
There are so few things that we can change about HD.
But learning about The Disguise and teaching it to others
is one that we can. Hopefully, simply a change in how we
see these features will remove the disguise and let us see
this person once again as the same one that we’ve known
and loved for so long.
Acknowledgment: Newsletter (AHDA (Qld) Inc –
February 2009
RESEARCH
The University of Queensland Australia
Research breakthrough targets genetic diseases
A cure for debilitating genetic diseases such as
Huntington’s Disease, Friedreich’s ataxia and Fragile X
syndrome is a step closer to reality, thanks to a recent
scientific breakthrough. The finding, which was published
in Science on January 15, is the result of collaboration
between a team led by Dr Sureshkumar Balasubramanian
at The University of Queensland’s School of Biological
Sciences and Professor Dr Detlef Weigel at the Max
Planck Institute or Development Biology in Germany.
It identifies an expansion of a repeat pattern in the
DNA of the plant Arabidopsis thaliana that has striking
parallels to the DNA repeat patterns observed in humans
suffering from neuronal disorders such as Huntington’s
Disease and Fredereich’s ataxia,
Lead researcher from UQ Dr Balasubramanian said
being able to use the plant as a model would pave the
way toward better understanding of how these patterns
change over multiple generations.
“It opens up a whole new array of possibilities for future
research, some of which could have potential implications
for humans”, Dr Balasubramanian said.
more severe through the generations but were difficult
to study in humans due to the long timeframes involved.
A plant model with a relatively short lifespan would
allow scientists to study DNA mutations over several
generations, Dr Balasubramanian said.
The study, called “A genetic defect caused by a triplet
repeat expansion in Arabidopsis thaliana”, also had
implications beyond human disease, Dr Balasubramanian
said.
While the DNA patterns were previously only seen in
humans, current findings have shown the patterns occur
in distant species such as plants, providing new scope for
researchers in all disciplines of biology.
Story printed on: January 21, 2009, 5. 37pm. Story from
UQ News Online:
http://uq. edu.au/news/?article+17223
@2009 The University of Queensland, Brisbane
Australia
Acknowledgement: Newsletter – February 2009 – AHDA
(Qld) Inc
The types of disease the research relates to, which are
caused by “triplet repeat expansions” in DNA, become
Huntington’s News
June 2009
Issue 105 7
NEWS FROM THE REGIONS
Auckland / Northland News
Carers Retreat
Will take place in August we have a wonderful venue,
Jane and I hope to make it an enjoyable memorable
experience for those that are able to attend. We will be
in touch shortly as soon as details are finalized.
Annual General Meeting
Our A.G.M. will be held on 20th June at Ferndale
house, 830 New North Road, Mt Albert. Once again
we are privileged as Professor Faull and his team will
present latest development in H.D research.
Please note the change of venue. This meeting will be
catered for – no need to bring a plate this time!
Details will be mailed out shortly. For further
information or to be added to our mailing list,
please contact us on (0800 432 825) or email
[email protected]
Disease Association while you train and complete an
event visit www.fundraiseonline.co.nz
You can create your own FREE fundraising web page
complete with secure credit card donation processing
facilities and help raise money for the HD association.
The set up process is easy and all the money you collect
is paid directly to the HD trust account saving you time
and energy. You can upload your own photos, keep a
blog, email your friends your web page address, and
then watch your supporters donate to your charity, all
from the comfort of your PC. It’s simple, rewarding
and fun. You can choose from a selection of popular
events or create your own event. Friends and sponsors
can leave messages, your goal total is displayed and
funds raised so far calculated. So to try it out visit www.
fundraiseonline.co.nz !!!
Kind regards
Fundraise Online
If you or a group at your work or school would like to
fundraise for Auckland and Northland Huntington’s
Jo Dysart
Waikato News
We had the opportunity to have a weekend retreat in
Raglan. This was courtesy of Care Community Trust
who run these retreats for Hospice. Unfortunately
numbers were limited but the 4 clients and their
families that attended had a much needed break, and
recharged their batteries. It was a fantastic weekend,
a chance to meet each other and enjoy the beach. The
children all swam, (yes in May!) and the food that was
cooked by volunteers was yummy. Hopefully this will
be an annual event.
Great news – On July 3rd Professor Faull is coming to
Hamilton to talk, Keep this date free!
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Issue 105
June 2009
I have managed to telephone/visit a lot of you this year
and if I have a quieter day I am supporting MS clients
as well. If I haven’t managed to talk to you, please
contact me and let me know how you are getting on.
Even though I am part time (and possibly hard to catch
in the office (07) 834 4742 I will answer my cell phone
(027) 835 5425, and I do check my emails.
Netball and Rugby for my children started last weekend
and so did the rain! Gotta love the Waikato!
Kind regards
Deb Nagel
Huntington’s News
Wellington News
(Covering the following Wellington Huntington’s Disease Association areas Hawkes Bay, Taranaki, Wanganui,
Wellington, Wairarapa and Gisborne).
Greater Wellington
Hi Everyone
Unfortunately the Youth Camp that was to be held at
El Rancho later in the year has had to be cancelled
due to lack of interest/inadequate numbers. This is
disappointing as we had thought of possibly changing
the venue to a ski camp at Mt Ruapehu, which would
have been great fun. If there is enough interest, we may
look at booking this venue next year.
I would value comments and input from families and
workers as to what you believe would be the most an
appropriate venue for the young people in our HD
community.
The year is flying by and I have been busy over these
first few months meeting with many people in the
Wellington area and also making contact with allied
health professionals and social agencies who can assist
in our provision of services to clients and their families.
House and my community based clients with the
range of exercises done in the pool, having some good
results in movement for clients. I am also working in
conjunction with a rehab physiotherapist to establish a
programme of simple exercises that can be done in the
home with minimal equipment. I hope to standardise
this so that clients in any area can take advantage of it.
Carers’ coffee mornings continue with those attending
finding the support and comradeship invaluable.
I am on the residents’ committee of Amaryllis House
which means I will be a link for those families unable to
attend these day time meetings.
I continue to enjoy all the challenges the job brings and
look forward to the rest of the year
Kind regards
Jeanette Wiggins
The swimming group continues to be a source of
pleasure and value to both the residents of Amaryllis
New Plymouth, Wanganui and Palmerston North
We are currently looking at a support group in both the
Wanganui and Taranaki regions.
It would be really helpful if any one who is interested
contact me so we can discuss what kind of group they
are hoping for.
My social work services will continue to be tailored
to suit the needs of each individual. I am available for
home visits, telephone and email support or any other
enquiries. I regularly visit rest homes to visit clients but
also to educate and support staff which I believe is an
essential part of my job.
Hawkes Bay / Gisborne News
I intend to continue to increase my involvement with
other community agencies and promote the Association,
and the support it offers to families facing the daily
challenges of living with HD.
Please feel free to contact me at any time should you
require a home visit or any other form of support.
Kind regards
Annette Turner-Steele
Welcome to all, and especially to our new families who
have made contact here in the Bay.
Kia ora koutou
Ko Tanya Jeffcoat taku ingoa.
Hi, am currently learning Te Reo Maori and taking
every opportunity to practice!
My main role is providing home visits and phone
contacts and emails to all families in Hawkes Bay,
Huntington’s News
Continues on page ten
June 2009
Issue 105 9
Continued from page nine
including Central Hawkes Bay, and currently in
Gisborne, to support and assist with families holistic
needs!
I work closely with the Rest Homes who are looking
after our families’ members, as well as providing
information talks to community groups.
We have regular Support Group Meetings and our last
one in Hawkes Bay was on a gorgeous Sunday looking
out at the sea with 16 people, including three new
people to the group and one partner. Our families in
Gisborne also have been meeting every three months
when I have been visiting, for a shared lunch and chat.
In Hawkes Bay we also have regular Carers Meetings
where carers get a chance for a well-earned treat and
to meet others and share ideas, support, and have some
fun.
Also in Hawkes Bay we have begun our weekly Water
Exercise Class in partnership with the MS Society. This
time of the year is a challenge to think about getting
into the pool, but it is very much worth it. The class is
open to all people with HD and we welcome support
people, so if you are interested, give me a call.
Our next meeting will be a pot-luck dinner on 23rd June
with Professor Faull and a colleague from Auckland
Gisborne
We are pleased to announce the appointment of Cheryl
Morley as the Huntington’s Advisor for the Gisborne
Region. Cheryl is taking over from Tanya Jeffcoat who
will be coming down, and also a geneticist is coming up
from Wellington before we present our HD Session for
GP’s in Napier.
Please feel free to phone me anytime for support,
information, or a chat on (06) 835-3020.
Sadly two people from our group in Gisborne passed
away in April and our deepest thoughts are with these
families. It is certainly my privilege to have known
David, and to know Joyce’s family. Kia kaha.
SPECIAL REQUEST
Hi, am wondering if there are any parents of young
people who are living with Juvenile HD out there who
would be interested in talking with a mum whose 17
year old daughter has Juvenile HD. This is so terribly,
unimaginably hard – for everyone – and to be able to
talk with someone else who is going through or who has
gone through a similar situation, would make such a big
difference. So, if anyone is willing and/or would like a
bit more info, please contact me for a chat.
Thanks so much
Tanya Jeffcoat
HD Association Hawkes Bay – ph (06) 835-3020
temporarily covered the area. Tanya will continue with
her duties in Hawkes Bay. Cheryl contact number is
(027) 667 7674.
Cecil O’Neale
Chairperson
Christchurch News
A.G.M.
Sunday 5th July 2009 at 2.30 p.m.
at
Hornby Day Care Centre
93 Carmen Road, Halswell
Christchurch
Do come and support your Association
Please remember to bring a plate
10
Issue 105
June 2009
Huntington’s News
Huntingtons Trust
Wellington and Central North Island
Thank you To Our Funders
The above Trust was set up in 1993. The aim was to get
enough funds to enable it to help with the day to day
running of the Wellington Association and/or specific
projects.
Bequests to this Trust can be made in cash, shares, real
estate, or any other property and can be by way of a gift
during your lifetime or can be bequeathed in your will.
Bequests are free from estate duty.
If you require further information please write to:
◆ JR McKenzie Trust
◆ The Thomas George Macarthy Trust for their support
in the production of this Newsletter
◆ Telecom New Zealand Ltd for sponsoring the new
residential unit phone line
◆ Ministry of Health, Community Organisation Grants
Scheme (COGS), Lottery Welfare and PaperPlus
Marton – for supporting us with salaries and
overheads
◆ Pub Charity Inc – for assisting with projects during
the year
The Chairperson of the Trust,
P O Box 30420,
Lower Hutt 5040
◆ New Zealand Post for Community Post Envelopes
Many thanks to all who continue to make private
donations to our Association.
Mailing List
To help us keep the mailing list as up to date as possible,
could you please remember to drop us a note when you
change your address. Include the name or names you
want on the envelope plus your old address and new
address.
If there are any mistakes that need updating, or a family
member who received the newsletter has died, please let
us know about them also.
Mrs Elaine Bradley (Membership Secretary)
159 Tutaenui Road
RD 2, Marton 4788
[email protected]
Write to us about this newsletter, about information you
may need, about information you may want to pass onto
others. Write to us about controversial topics such as
privacy, confidentiality, access, support, etc…
We would like to hear from you.
Huntington’s News is the national Newsletter
of the Huntington’s Disease Associations of New
Zealand. It is published quarterly (March, June,
September, December) as a means of communication
between the Associations and all individuals with
Huntington’s Disease, their families, their caregivers and
professionals interested in the condition.
Editorial Board:
Contributions
The next issue of Huntington’s News will be published
in September 2009. The deadline for material to be
received for this issue will be 10 August 2009. Please
send any contributions for Huntington’s News to:
Glenys Shepherd (Editor)
PO Box 30420,
Lower Hutt 5040
or email: [email protected]
Glenys Shepherd (Wgtn)
Dorothy Tortell (Wgtn)
Judith Baker (Chch)
Design & layout: Stephanie Drew Design
Printing:
TruPrint Ltd
Important Notice:
HUNTINGTON’S NEWS and the INTERNET
Please note that any article published in Huntington’s News may be selected for reproduction on the
INTERNET on the “Huntington’s Disease Scene in New Zealand” website www.huntingtons.org.nz
If you are submitting an article for the national newsletter, please indicate to the editor if you prefer your
article not to be reproduced on this site.
Huntington’s News
June 2009
Issue 105 11
Contacts
Auckland /
NORTHLAND
HAWKES BAY
Wellington
TAURANGA / Te Puke
Jeanette Wiggins
(Huntington’s Advisor)
HD Association (Wellington) Inc
PO Box 30420
Lower Hutt 5040
Tel (04) 569 3252
Mob (021) 344 445
[email protected]
Tanya Jeffcoat (Huntington’s Advisor)
PO Box 4211
Marewa, Napier 4143
Tel (06) 835 3020
[email protected]
Sarah Wilkinson, Chairperson
PO Box 16238
Sandringham, Auckland
Tel (09) 815 9703
[email protected]
Jo Dysart
HD Association (Auckland) Inc
Neurological Support Centre
7A Taylors Road
Morningside, Auckland
PO Box 16 238, Sandringham
Tel (09) 815 9703
Fax (09) 815 9704
Mob (027) 432 8255 or
0800 HDAUCK – (0800 432 825)
[email protected]
Ann Hudson
106 Cheyne Road
Pyes Pa
Tauranga
Tel (07) 543 9344
Cheryl Standring
MS Society
PO Box 10376
Bayfair
Tauranga
55A Edgecumbe Road
Tauranga
Tel (07) 571 6898 (Field Officer and
Office)
[email protected]
Jane Devine
HD Assn (Auckland) Inc (as above)
Mob (0274) 328 256
[email protected]
Hamilton
WHAKATANE / OPOTIKI
Deb Nagel
Client Services Co-ordinator
c/- MS Waikato Trust
PO Box 146, Hamilton
Tel (07) 834 4742
Mob (027) 385 5425
[email protected]
www.mswaikato.org.nz
Lynette Richardson
Tel (07) 312 9397
New Plymouth /
Wanganui /
PALMERSTON NORTH
Annette Turner-Steele
Social Worker
PO Box 101
Marton
Tel/Fax (06) 327 7389
Mob (027) 496 6500
[email protected]
Rotorua
Lorree Adam
20A Whitworth Road
Rotorua
Tel (07) 348 4267
Alison Meinhofer
MS Society
c/- Community House
1115 Haupapa Street, Rotorua
Tel (07) 346 1830
Fax (07) 346 1840
Blenheim
Bev Jones
PO Box 31, Blenheim
Tel (03) 578 4058
Fax (03) 577 5271
Gisborne
Cheryl Morley (Huntington’s Advisor) Nelson
Mob: (027) 667 7674
Pam Grey
MS Society
Ph. (03) 544 6386
12
Issue 105
June 2009
Huntington’s News
Cecil O’Neale, Chairperson
PO Box 30420
Lower Hutt 5040
Tel (04) 528-8094
Mob (027) 213 4113
WEST COAST/Hokitika
Lyn Hahn
PO Box 25, Ahaura
Tel (03) 732 3827
Fax (03) 732 3813
Christchurch
Judith Baker
PO Box 78
Cust, North Canterbury
Tel (03) 312 5612
Diane Collins, Chairperson
8 Fusilier Street
Hoon Hay
Christchurch 8025
Tel (03) 960 5913
[email protected]
Lynne Switzer, Field Worker
Tel (03) 326 5189
[email protected]
Dunedin
Zena Pigden
ISIS Centre
Private Bag 1940, Dunedin
Tel (03) 476 6044 ext 5485
[email protected]
Invercargill
Maree Lewis
MS Society
PO Box 1561, Invercargill
Tel (03) 218 3975